Disability in 2020
Before the PLUNGE
Disability in 2021
Not quite business as usual
We are honored and thankful to spend part of New Years Day with YOU!
Go ahead and make merry, but be ready to take note of upcoming issues and actions. Adrienne, Mark, Eddie and Sheela (maybe Josh and Shelley, too?) will talk, roundtable fashion about the hard times and delicious nuggets from this year…yes, there HAVE been delicious nuggets.
Also, excerpts from “The Advantages of Having a Speech Disability” by Jacob Lesner-Buxton. (Full text below)
Listen in for some hope for the coming year and to prepare for the battles to come.
Produced by Sheela Gunn-Cushman.
Round Table: Eddie Ytuarte, Mark Romoser, Sheela Gunn-Cushman & Adrienne Lauby
The Advantages of Having a Speech Disability
By Jacob Lesner-Buxton
“If someone offered me ten million dollars, I wouldn’t give up my disability.” I have used this line in many training sessions that I do for work. As insignificant as I think the line is, it has always seemed to get the most reactions from an audience. People with disabilities often tell me that they have never known someone that had so much pride in their impairment as I have. Even elders in the disability community are blown away by the scale in which I celebrate my identity.
However, that statement about not trading my disability for money is not entirely true. There is one disability that I might want a doctor to find a cure for me. I might even cash out my retirement to pay for the operation. The disability, for which I would be willing to cash out my retirement to fix, is my speech. For those who don’t know I have a disability that makes me harder to understand than most people. The disability has cost me many social and economic opportunities. It makes conducting business over the phone hard and it has caused an untold number of negative reactions from people laughing in my face to assumptions about my lack of cognitive ability. Rarely have I enjoyed hearing myself on tape or seeing myself in videos. Up until the age of seventeen, I had never said anything positive about my voice. While I have grown to love all the parts of my body, I still dislike the sounds that emanate from my mouth.
However, my speech impairment has taught me some great lessons that assist me in daily life such as:
- People care more about your actions than your words
In my work, I attend a lot of government meetings and serve on several committees. A lot of these meetings involve politicians, spending 15 or 20 minutes before a vote trying to justify to the audience why they are making this decision. For example, I was at a meeting about banning army recruiters from high schools in my city, and a committee member who voted in favor of the ban told 18 minutes of war stories involving his family. I doubt that anybody called him up the next day and said “ Frank I. hated your vote but damn it you sure tell a good war story.
Few people care if a public official has sympathy for their cause if they don’t back up those words by passing legislation. I know that people have a hard time listening to me and therefore I only ask the questions I need to at meetings and I don’t spend an inordinate amount of time trying to appease both sides of an issue. If people want to hear how I made my decision, they can e-mail me. However, as of now, I have never been asked to provide an explanation for one of my decisions.
Another thing I typically don’t do at meetings is reiterate what another committee member says. I serve on committees with people who make the exact same comments one after the other. Again, since it’s challenging for others to focus on my speech, I prefer to bring up new points instead of rehashing what someone has said. Often, people on my committee reiterate because they want to join the chorus of those heaping praise on a government employee or program. While giving public acknowledgment is great, if I don’t have something unique to say, I keep quiet. Besides, the best way to give praise to government employees is by having short meetings that allow them to get home earlier.
- Don’t try to force conversations
“Yeah“, ”Uh-ha”, and Wow”, are three examples of responses people give to let others know that they are not in the mood for a conversation. They could be busy or simply don’t want to engage with that person. Getting these responses makes me think the person is not understanding my speech. Therefore, I try to have conversations only when I can tell that the other person is engaged in what I am saying.
My system of trying to make sure people are up for conversations before talking isn’t perfect. Some times I need to tell my boss something when he’s busy and I prepare myself for getting an “uh-ha” and “ok “ response from him. Other times people do want to talk, but they can’t understand me so they do the “uh-ha” stuff. Often, they confess, that they can’t understand and get someone else to translate or find a different way to communicate.
Once I was getting the “uh-ha” treatment from a woman when I was talking about a cancer diagnosis that I had gotten earlier that day. Feeling perplexed by her reaction, I asked if she understood me. After hearing she did, I quickly shut up. I didn’t want to waste energy trying to get support from a person who had little interest in giving it.
It puzzles me how other men can carry on a conversion with someone who does the “uh-ha” and “ok” routine. Once a guy at my office was 45 minutes early for his appointment and waited in the lobby. A colleague of mine working in that area became the center of his attention. For forty-five minutes he rambled on nonstop to her responses of “uh-ha” and “wow”. While watching this interaction, I wondered if the man understood that his chatter wasn’t impressing my co-worker. Maybe he believed, as other men do, that through persistence he could somehow win her over. With my speech impairment, I know that if someone I am attracted to doesn’t respond to my game in five minutes, then there is a good chance she won’t reciprocate my feelings.
- When speaking falls try other methods of communication
Many people with speech impairments discover tricks for getting help from others who might not understand us. For instance, when I have to take a taxi, I often print out a map of where I am going. I have been known to bring photos of the items I want to buy to different stores and write messages on my cell phone to show people who are having trouble understanding me.
Perhaps the most important skill in my arsenal to get people to understand me is developing scripts for my interactions with doctors, workers at the post office, bank tellers, etc. Like actors, I often rehearse these scripts before doing errands. I find that having a script is effective so that I don’t get tongue-tied when trying to make my requests.
Using scripts and props in everyday life has helped me tremendously. I notice when I forget to bring tricks like maps for the cab driver my frustration level increases. While I am waiting for a company to develop training on “how to understand Jacob”, at least I can get my needs met by doing a bad Charlie Chaplin impersonation.
- Having a speech impediment keeps superficial people away from me.
Up until now, I talked about lessons that have a strong correlation to my speech disability. However, the next lesson may be tough to measure. I believe that having a disability has helped keep people who are superficial from trying to be my friend. I know that that statement is subjective as hell so let me explain.
First, about 90% of my friends have other people with disabilities in their lives. Their existing relationships mean that they have been exposed to people like me, therefore they didn’t appear to be nervous at our initial meeting, They also don’t care about what others think which is helpful since people sometimes stare when I’m out in the community. From my speech to my gait, I know that I don’t attract people who only want to associate with model types.
Even though it has taken me a while, I’m ok with not being the typical California pretty boy portrayed in the media. Moreover, I don’t want to try to open someone’s superficial eyes to the wonders of getting to know someone with a speech impairment. I spent too much of my life trying to make myself appealing to those people and ignoring the friends who were ready to accept me. Although I have conflicts with friends from time to time, I don’t feel that I attract very many individuals who exploit the connections they have with me. I know that many people with disabilities who are befriended by those who are interested in exploiting them and I feel fortunate to have such trustworthy people in my life.
- I can use my speech disability to be a bastard to others.
For those who are reading this who are looking to be inspired, buckle up because this last lesson shows my devilish side. See I sometimes use my speech disability to get away with saying things to people knowing they can’t understand me. For instance, while attending a summer program in high school, I told one of the other attendees he benefits from systemic racism and class privilege. He had been bragging about his wealth saying that once women see his house and BMW, they can’t stop french kissing him. Sick of his bragging, I pulled him aside and told him he was privileged using word straight out of a Marxist study group. I prefaced my statement by saying “I know you not going to understand what I’m about to say.” After my speech, he thanked me.
Looking back I think the guy was overstating his wealth, but I felt satisfied for speaking my mind. There have been times where I have been in meetings with people who I found annoying, and I mumbled something to a friend about them. They couldn’t understand but my friends and I would extend devilish glances like we are passing notes in 7th grade. I still get a kick out of being able to talk crap and sometimes get away with it.
I hesitated about writing this article. From one perspective, a list of lessons one learns could sound self-indulgent and preachy, yet it could also be seen as encouragement for those who have speech impairments to take pride in their disability. As I mentioned, not all perks from having a disability will be universally seen as good. However, some might consider the more devilish perks as being small ways to screw with an ableist society.
Lists showcasing the government benefits of all types of disabilities should be handed out by hospitals, schools and featured on government websites. Doctors could present them along with flowers, sparkling apple cider, and a “congratulations your child is disabled” sign shortly after the baby is diagnosed. I know the idea of celebrating disability might seem jarring to some but it could be a change from the messages of doom and gloom that many doctors give parents. I am sure some families may enjoy this new approach.
A “congratulations you’re disabled” party should be repeated once every two or three years for the child and it should be thrown by his or her school district. While some might see having a party for being disabled another sign of society babying millennials, I would argue that there needs to be more investment in disability-positive activities. A local school district reportedly has an unspoken rule about not bringing up a student’s disability with them until they are four months away from graduation. While I have heard conflicting accounts about the existence of this policy, the fact that this rule could exist shows that institutions still aren’t comfortable with disability.
One of the results of this school district trying to cover up disability is that about 36% of its graduates who were in special education drop out of community college in their freshman year. Perhaps one of the keys to reversing that trend is to institute practices such as disability pride celebrations into the curriculum, rather than avoiding the disability issue until the last possible moment. While it might seem unusual to tell a student about some of the advantages of having a disability such as the ability to gossip behind people’s backs, it might get them laughing. Their laughter, the corny celebrations, and the lists might exist in a society where taking pride in one’s disability is the norm, not the exception.
Jacob Lesner-Buxton lives with Cerebral Palsy and his essay titled, “The Advantages of a Speech Disability,” was a 2020 highlight. Jacob is based in Santa Barbara where he is a System Change Advocate at the Independent Living Resource Center. You can find more of Mr. Lesner-Buxton’s writing on his facebook page and through the Berkeley Disabled e-group list.